206th ENMC International Workshop: Care for a novel group of patients – adults with Duchenne muscular dystrophy Naarden, The Netherlands, 23–25 May 2014

• Paradigm shift – seeing DMD as a childhood onset chronic disease.
• Lack of knowledge outside specialized centres on the basic areas of care.
• In transition to adult care, co-ordination is key.
• People with DMD wish to be partners in addressing care issues.